Pheochromocytoma & Paraganglioma: What Every Endocrinologist & Physician Needs to Know 

Contrary to what the NIH Dr Karel Pakar, Debbie Cohen, Daniel Pryma and surgeon and MD Kebebew's mentions at the Para Pheo online meeting, I want to ask a single question, How do I survive state 4 Paraganglioma Cancer without surgery for almost 30 years? HOW PGL patient, Nurse and Medical Tech. (by-lateral neck, chest [left lung] and around 2015 the thyroid [left lobe]).

Thank you so much.by accident rmi the found something in my thorax and suggested that was paraganglioma.my doctoc suggested to check in Nov 2021 because of covid all appointment where cancel.now because of your brilliant explanations I'm going to insist to do all what is necessary because I have a lot of symptoms.my sweating is not normal.

My pcp clearly knows nothing about this or he would have screened for it. I already had uncontrolled hypertensive and palpation + Headaches and dizziness episodes for over a year before i suddenly developed symptoms of what can I can only describe as panic attacks, and i even told him i thought i had seratonin syndrome at one point. I am going to ask him for the blood test because i am going under anesthesia in December and it had me really nervous because of these episodes, even before I discovered pheo para accidentally when i was looking up the hospital my surgery will be at.

I have all the symptoms of pheochromocytoma. The numbers in my urine are abnormal but they say not abnormal enough. They can’t find the tumor. But My quality of life is not good. My blood pressure goes really high then drops to normal, but stays mostly high. My heart rate is always high. Sometimes extremely high. I have sweat attacks off and on. Dizziness, sense of attack, chest pains, extreme fatigue. I’ll go anywhere for help. I’m not getting the help where I’m at.